Sickle Cell Crisis in Vidarbha: Why Is It So Widespread?

thenewsdirt
Jun 23
8 min read

A representation of Sickle Cell disease. Sickle cell disease is widespread in Vidarbha

Vidarbha faces a genetic health emergency that affects thousands of tribal families, yet remains largely invisible to mainstream attention.

Vidarbha contributes to 70 per cent of sickle cell disease cases in Maharashtra, housing the majority of the state's 16,413 diagnosed patients.

The tribal populations in this region bear the heaviest burden of a hereditary blood disorder that claims lives before children reach adulthood, whilst families struggle with treatment costs that can exceed Rs 32 lakh.

Sickle Cell Disease Statistics: The Overwhelming Burden in Vidarbha

East Vidarbha has emerged as the epicentre of sickle cell anaemia in Maharashtra, with an estimated 50,000 patients concentrated in this single region.

The six districts within the Nagpur division alone account for 1.32 lakh carriers out of Maharashtra's total 2.10 lakh carriers, representing 62 per cent of the state's genetic disease burden.

The tribal communities show particularly alarming sickle cell prevalence rates. The Bhils, Madias, Pawaras, Pardhans, and Otkars demonstrate carrier rates ranging between 20-35 per cent. Districts including Gadchiroli, Chandrapur, Nagpur, Bhandara, Yavatmal, and Nandurbar are estimated to have more than 5,000 cases of sickle cell anaemia each.

Recent screening data from Lok Kalyan Diagnostics reveals concerning statistics across nine districts in Vidarbha. Out of 58,293 individuals examined through 496 health camps, 3,459 were identified as carriers of either sickle cell or thalassaemia traits. The carrier percentage stands at 5.93 per cent across the region.

The mortality rates paint a grim picture of the genetic disorder's impact. About 20 per cent of children with sickle cell disease die by the age of two, according to Indian Council of Medical Research surveys.

Among tribal communities, 30 per cent of children with the hereditary condition fail to reach adulthood. In central India, approximately one in 86 births among Scheduled Tribes are affected by sickle cell disease.

Maharashtra ranks third nationally in sickle cell cases with 15,163 patients, following Odisha with 49,095 and Chhattisgarh with 18,207 cases. Of Maharashtra's total cases, 8,842 originate from the Vidarbha region.

The state has detected 16,400 cases since enhanced screening efforts began, with 24.5 lakh people screened in 2023-24 and another 11 lakh screened in the current fiscal year.

Sickle Cell Treatment Costs and Healthcare Infrastructure Challenges

The healthcare system in the region faces significant challenges in managing sickle cell disease patients. Despite Maharashtra being India's wealthiest state, rural areas where the blood disorder is most prevalent suffer from insufficient health infrastructure.

Patients requiring specialised sickle cell treatment often face referrals to distant cities, highlighting the inadequate healthcare provisions in high-prevalence regions.

Dr Ramesh Katre, a senior doctor from Gadchiroli, notes that over 40 per cent of cases experience associated complications.

Sickle cell treatment costs present a formidable barrier for tribal families. The typical cost of sickle cell anaemia treatment in India ranges from approximately $18,000 to $20,000 USD, with bone marrow transplantation costing between Rs 16 lakh to Rs 32 lakh.

Recent developments offer hope for affordable sickle cell medication. Hydroxyurea, the primary drug for managing sickle cell disease, is now available in India for Rs 600 per vial. This represents less than one per cent of the price of imported versions that cost around Rs 77,000 per vial.

The domestically produced variant remains stable at room temperature, unlike imported versions, requiring refrigeration.

AIIMS Nagpur has established dedicated sickle cell treatment facilities, including priority outpatient services, guaranteed bed availability, and free essential medications during clinic hours. The institution has formed a dedicated committee of faculty experts to oversee these initiatives and establish research collaborations.

The pathology department features cutting-edge diagnostic technology, including High Performance Liquid Chromatography and next-generation sequencing for genetic testing.

Dr Vinky Rughwani, director of the Thalassaemia and Sickle Cell Centre, emphasises that mandatory testing of college-going youths could facilitate early detection and prevention of genetic disorders.

He advocates for treating sickle cell patients as exceptions, allowing vaccination regardless of age group.

National Sickle Cell Elimination Mission: Government Response and Screening Programs

The National Sickle Cell Anaemia Elimination Mission, launched by Prime Minister Narendra Modi in July 2023, represents the most comprehensive governmental response to India's sickle cell crisis. The mission aims to screen seven crore people aged 0-40 years across 278 districts in 17 states, with a target of eliminating the genetic disease by 2047.

Maharashtra participates in this national sickle cell screening program with targets of 63 lakhs for 2023-25 in the 0-40 age group.

As of January 2025, the state achieved 53 lakh screenings, representing 82 per cent of the target.

The mission covers 21 districts in Maharashtra, including all tribal districts such as Thane, Nashik, Nandurbar, Amravati, Gondia, Gadchiroli, Palghar, Nagpur, Wardha, Chandrapur, Bhandara, Yavatmal, Dhule, Jalgaon, Nanded, Buldhana, Washim, and Akola.

Government data shows that till September 2024, Maharashtra had screened 42.64 lakh people as part of the national mission.

All pregnant women in 21 high-risk districts undergo testing for the blood disorder, and positive cases trigger partner testing.

The health department also provides genetic counselling and testing for potential fertile couples, recommending pregnancy termination if a foetal mutation is detected.

PATH, an international organisation, collaborates with Maharashtra's public health department to provide technical assistance for accelerating the mission's rollout. The organisation focuses on enhancing the availability, accessibility, and quality of sickle cell disease-related services whilst demonstrating scalable district approaches.

The screening methodology primarily employs solubility tests followed by High Performance Liquid Chromatography for positive cases.

Digital technology integration supports the mission mode approach, with regular meetings between Union ministries of Tribal Affairs and Health.

A dedicated web portal and mobile application facilitate data entry and monitoring by each district for genetic disease surveillance.

Tribal Communities and Social Impact of Hereditary Blood Disorders

The social and economic implications of sickle cell disease in Vidarbha extend far beyond medical considerations.

Most affected patients originate from lower socio-economic backgrounds, facing significant financial constraints. The genetic disorder prevalence is highest among the Mahar sub-caste of Scheduled Castes, followed by the Gond tribes and other backward classes.

A study from Gondia district revealed demographic patterns showing more females as carriers and more males as cases. Most patients presented between 11-20 years of age, with unmarried cases significantly higher than unmarried carriers.

The Gondia block, despite representing only 20 per cent of the district, contributes the highest number of patients.

Manoj Ramkrishna Ramtake, a 31-year-old from Gadchiroli, exemplifies the personal toll of inadequate healthcare infrastructure. Living with hip joint osteonecrosis due to reduced blood flow, he cannot walk and requires assistance for mobility.

His family has spent over Rs 1 lakh on treatment in private hospitals, and he had to discontinue education due to chronic pain from the blood disorder.

The COVID-19 pandemic revealed additional vulnerabilities within the sickle cell community. Five sickle cell patients aged between 10 and 35 years died among COVID-19 deaths within five days in January 2022. Doctors emphasise that people with sickle cell disease face four times greater risk of hospitalisation and twice the risk of dying from COVID-19.

Dr Vinky Rughwani, founder president of Thalassaemia and Sickle Cell Centre, highlights the need for separate screening and admission procedures for sickle cell patients. He notes that whilst these patients may appear normal, organ damage and infection occur rapidly, requiring immediate medical attention.

The tribal populations' reliance on primary healthcare facilities in rural and remote areas compounds the challenge.

Most tribal communities depend on basic health services that lack specialised equipment and trained personnel for managing complex sickle cell complications.

The hereditary disease affects entire families, with genetic counselling becoming crucial for preventing transmission to future generations.

The path ahead requires bridging the gap between policy announcements and ground-level implementation. Vidarbha's journey towards elimination by 2047 depends on transforming screening numbers into tangible healthcare improvements for the thousands of families currently navigating this genetic health challenge.